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Monday, 18 November 2013

This is the first part in a short series on aids and adaptations, so it seems a good time to explain my own personal position.

When my disability first started to really affect my ability to function on a day-to-day basis, the first thing that I did was turn to a disability catalogue and see what was out there to help me. There were, and are, lots of ingenious things on the market to make life easier for people with disabilities. Many of these aids are very expensive. If I can improvise a cheaper solution, I often prefer to do so.

It's easy to get so used to using an aid (sliding board, special cutlery, etc) that it becomes very difficult to move outside one's own environment - either I have to bring all my own cutlery everywhere I go, for example, just in case I decide to stop for a snack, or I miss out. Covering all eventualities can make for a heavy handbag! Wherever possible, I try to learn how to manage without aids, even if I do then use aids most of the time.

All this stands within reason - if I can't adapt my way of doing something to avoid the need for an aid, can't make or buy a cheaper alternative, then I need an aid. In this case, there's often a choice, and I'd like to share with you, through this series, some of the aids that I do use regularly, why I use them, and some of the other options that are available.

Finally, I'd like to remind you about why I need to use these aids in the first place. I have Ehlers-Danlos Syndrome, which means that my joints dislocate very easily. I don't have much strength or joint stability. I have breathing difficulties, chronic pain, a hearing impairment, dysautonomia, gastroparesis and dysmotility, bladder dysfunction, and immune/endocrine problems. I know others with the same condition who use far more aids, and others who use no aids at all. None of us are affected the same way by our conditions, and we each have our individual preferences as to how we deal with our impairments. This series is based on my own personal experience, so while I try to be objective, my opinions might be very different from yours!

While I'm preparing my list of aids that I love, why don't you tell me about yours? What do you find really helpful? What was a waste of space? Are there any aids that you'd sell your own grandmother to own?

There is an opera by Philip Glass about the development of Mohandas Ghandi's philosophy of Satyagraha. It's a compound word from the Sanskrit, meaning "Truth Force" or "holding onto the truth."

I was listening to the radio this morning, to a discussion of, among other things, Ghandi's early life. This word, Satyagraha, really struck me. It is necessary to hold onto the bigger picture in order to make change.

As someone with a disability, I encounter people who see themselves as victims, martyrs, or warriors. These people rail against the injustices and hardships faced by people with disabilities.

Thinking about the Truth Force this morning has made me think again about why I feel so strongly about patient advocacy. I know that trying to make change from the point of view of a victim is difficult. I need to find a bigger understanding and force to hold onto, which will be the central driving purpose in my advocacy.

Tuesday, 1 October 2013

This is my dad. And me. Circa 1983. Note and appreciate the matching Laura Ashley wallpaper and curtains.

Today is my dad's birthday. Or at least it would have been, if he were still alive. He would have been 62 today.

My dad died three years ago. Time has dulled the pain of his absence enough that I can think of him without feeling that the breath has been knocked out of me, but I still don't know how to treat his memory; his birthday and the anniversary of his death.

Dad was a very private man. He loved Manchester United football team, his family (possibly in that order), books, music and films. He laughed generously and often, and loved to play mischievous tricks. He loved words, and playing with words.

I still find myself storing things up to tell dad. New words, jokes that would make dad laugh, books and films that he'd love. I feel so sad to think that I can never share these things with my dad again. It diminishes my pleasure in life knowing that I can't share any of the things I love with dad.

Richard and I saw Bill Bailey live on Saturday. I loved the show, but found myself thinking over and over how much my dad would have enjoyed it. I desperately wanted to share with dad the word, incretinate. To make stupid, cretin-like. I wish I could share Tim Minchin's song, Prejudice. Dad would have got even more joy, if that's possible, than I do from the use of the word homonym.

My dad loved Hilary Mantel's Wolf Hall. He was so jealous, as I started reading it, that I would get to spend time with the characters that he'd followed. I felt so sad, reading the fabulous sequel that dad would never read, and learning what happened next.

I feel deeply and intensely grateful that my dad passed on his love of life, his humour, his interest in books, films, politics and music to his children. I wish that I could still share these things with my dad.

I wish that I could just have one more year of forgetting dad's birthday, exchanging books, poetry, films and music; of timing my phonecalls to coincide with the football half time (or full time), hearing dad's tone change from reluctant 'hello' to delight at hearing from his favourite (only) daughter.

I never questioned my dad's love for me or my siblings. He took such delight in all of us, and celebrated our differences. He was interested in everything that we loved, and listened so intently as we shared our lives and interests, from rugby to classical music, the psychology of teaching to politics.

I want to celebrate my dad on his birthday, but I still wish so much that he were still here.

It is a comment about the view of disability that portrays people with disabilities as able to achieve powerful things by determination alone. I was utterly glued to the Paralymics this time last year. I was transfixed by the incredible feats of athleticism from people who only a generation or two ago might have spent their lives in institutions. Let's take the wonderful Sophie Christiansen OBE as an example. Sophie is 25 years old. She has competed as an equestrian in three consecutive Paralympic Games, winning medals at each one, including five gold medals in London last year. Not content with being a phenomenal athlete, Sophie also has a first-class masters degree in maths.

I don't want to take anything away from Sophie and the other Paralympians, who have obviously dedicated themselves to their sports, and all the commitment and mental and physical strength that entails. Winning a Paralympic medal (or heck, even just qualifying for a Paralympic Games) is an awesome achievement.

However, in my experience, there is a tendency for people to make comparisons. Often, the comparison is not very specific. I am perhaps one of the least athletic people in human history, and yet I couldn't count the number of times I've been asked if I've considered competing in world class sport, simply because I have a visible disability. For the record, no, I haven't considered it. Day-to-day life is more than enough of a challenge for me.

During the Paralympics, the message of hope was repeated like a mantra: set your mind on it, and you can achieve anything.

In my own personal experience, that just doesn't ring true. One of the things that I find most difficult about my condition is its unpredictable nature. Almost every day I am determined to do things, and almost every day my body rebels, leaving me flat on my face, flat on the sofa, or in hospital yet again. I push myself to socialise, bake, knit and read, and most recently, to go out every day. Sometimes it works, and I appreciate the wisdom of those motivating chants. Other times my body insists on full payback. It is during those times that I struggle most with feelings of inadequacy and guilt.

I try to be forgiving of my body's weakness, working patiently to increase my strength and stamina, despite the symptoms that I experience of a daily basis. Improving my attitude is a big part of increasing my quality of life, but it has to include acknowledgement of my disabilities. My achievements are made with the body that I have. I have to know my weaknesses and work with them.

I have encountered plenty of people with negative attitudes towards their disabilities. Those who drop everything and wait to get better before they can get on with their lives; those who refuse to do anything for themselves; those who allow their condition to take over every aspect of their lives, or who become bitter and angry. These people, although their disability is in their body, also shackle themselves with their minds.

Disability is not all in the mind. A good attitude is unlikely to produce miracles, but a bad one will always drag you down. As one of my friends used to say, "Love life. Dream big. Be positive!"

Thursday, 2 May 2013

One of the things about being a young female with multiple troublesome symptoms is that at some point, it is almost inevitable that a medical professional will suggest that there's an element of neurosis.

In the best case scenario, there is incontrovertible evidence of physical disease and/or you find a team who believe your pain and other symptoms, and are prepared to work with you to find solutions.

The worst case scenario (and there is no fiction in this) is that the words 'neurotic' or 'hysterical' attach themselves firmly to your medical record, colouring every decision and every consultation. It's very hard to get an independent opinion on anything if even new doctors have those perjorative words ringing in their ears. If your doctor is convinced that you're the sort of anxious soul that makes mountains out of molehills it can be almost impossible to get any investigations done, let alone appropriate treatment.

Thankfully, although there have been plenty of doctors and nurses who've suggested that I'm 'just anxious', the physical evidence has always been there to convince them otherwise. I remember once as a teenager being wheeled into the A&E department of my local hospital by paramedics, in the middle of a severe asthma attack. The first nurse that we encountered told me very briskly that she couldn't hear a wheeze, and therefore I was probably having a panic attack, and should really pull myself together. Of course, when the doctors came in, they checked my blood gases (a measure of oxygen and carbon dioxide in a sample of arterial blood) and found that my oxygen was critically low and my carbon dioxide was beginning to rise. Both of these are signs of potentially life-threatening asthma. The reason that there was no wheeze to be heard was that there was almost no air moving in or out of my lungs. This is not generally considered a sign of teen angst.

Needless to say, I didn't die from that particular asthma attack (or any of the others that I've had since that time), but it scares me to think that the prejudices of one single person could have had very nasty consequences.

I have heard many horror stories from other people, particularly those with gastroparesis, which is hard to diagnose without a high index of suspicion. The symptoms, much like a psychiatric eating disorder, can include vomiting after meals, aversion to food (hardly surprising if it always causes pain and/or nausea/vomiting), weight loss, bloating... If a 'diagnosis' of an eating disorder with attention seeking behaviour is made before a gastric emptying study can be performed, the person with gastroparesis may be sentenced to months or even years of inappropriate treatment and suffering before getting a proper diagnosis. Of course I assume that eventually they will succeed in getting a diagnosis and effective treatment. Everyone likes a happy ending.

The suspicion of neuroticism seems to rise in proportion to the number of vague or unexplained symptoms. Therefore syndromes like Ehlers-Danlos, systemic lupus erythematosis, and so many other syndromes or illnesses have a high proportion of people who were diagnosed long after first presenting with symptoms. In some cases this is down to lazy thinking or lack of knowledge. I freely admit that Ehlers-Danlos is rare, and therefore not at the top of the list of differential diagnoses for most doctors, but when a patient presents repeatedly with a host of unexplained symptoms, sometimes there is a link, and sometimes that link is a physical condition that can (and should) be treated.

Of course I understand that doctors do see patients who are neurotic or have health-related anxiety; people who present with mysterious symptoms that don't respond to conventional treatments. My plea to doctors would be to keep the flame of diagnostic curiosity burning, even if it's right at the back of your mind. By all means, encourage people to develop non-medical coping strategies and try to reduce the number of inappropriate investigations or invasive treatments, but keep your mind open, and be prepared to pursue a non-psychiatric diagnosis if the evidence seems to be pointing that way.

Wednesday, 1 May 2013

Crystal from LivingWellWithGastroparesis.com commented recently that she has a standard answer when people ask her how she is: "It's been a lot, but we're hanging in there."

I say the same sort of thing, and wonder how many other people gloss over the difficulties inherent in living with a chronic illness of any kind.

One of the problems for me is that I smile a lot. I don't drop the smile for many people, even for my doctors, so the general consensus tends to be that I am doing well. As a result of this, I somehow managed to slip through the net of follow-up with my gastroenterologist. I thought that I was doing ok, and that I could cope without any help. My doctors thought that I was doing ok because I didn't contact them to find out why I hadn't been sent an appointment.

By the time I did see my doctor (at least nine months later than I should have seen him) things were not good. I was severely anaemic, acidotic, and almost bedbound. I told my doctor that things were not good, and he immediately arranged for me to be admitted to hospital. I couldn't even cry with relief because I felt too ill. Instead, I lay across the seats in the waiting room and concentrated on not vomiting while I waited for a bed on the ward.

How did things go so wrong?

I think it started when I left hospital. I had been in hospital for almost a month, and was desperate to be allowed home because we had guests coming to stay with us. This deadline meant that I absolutely jumped at the chance to be allowed to leave, and didn't make sure that everything was in place to support me as an outpatient.

When I left hospital last year, on a Wednesday or Thursday night, I didn't even have enough medical supplies to get me through the weekend. I had no follow-up arranged with either my Gastro doctor or dietician, and couldn't get hold of my GP at such short notice. I was being sent home on tube feeding, having not reached any of the feeding targets set while I was in hospital, and without any clear guidelines.

How will this admission be different?

While we know more about the problems this year, and have a clearer diagnosis, the situation isn't that dissimilar. I am actively losing weight (one of those rare situations in which this is not considered a good thing!), am malnourished, anaemic, and experience severe pain, nausea and bloating in response to even the lowest rate of tube feeding. Last year we tried a number of different feeding preparations (low calorie, high calorie, semi-elemental) and lots of different ways to increase the rate. We tried feeding at a very low rate, 24 hours a day, and gradually increasing. We tried increasing rapidly in an attempt to shock my body into cooperating. We tried regimes that involved timed increases and decreases in rate. Nothing really worked, and nothing has really changed.

Currently, I am on TPN (complete nutrition, given to me through a drip into a large vein). It's great as a short-term solution to stop the weight loss and provide my body with some of the nourishment it so badly needs, but there are serious risks and complications, so we are all working towards getting my gut working!

Before I go home, I need a plan to follow - how we are going to increase the rate of feeding (or how I'm going to stay nourished and hydrated), and I need to know who to contact if things go wrong. Going wrong is something that also needs to be carefully specified - I want to have clear goals so that I know if I'm not meeting them. I want to have a time frame in mind, with an appointment booked for the end of that trial period.

I've talked about 'SMART' goal-setting in the past (as described by Paul Meyer in Attitude is Everything), and this is something that I intend to use again when we're discussing how I'm going to manage when I leave hospital.

1. Specific goals, and a specific plan telling me how to achieve those goals (e.g. increasing the rate of feeding by 1 ml/hr per day, up to a target rate of 80 ml/hr)
2. Agreed parameters for me to Monitor/Measure so that I know if things are not going according to plan. This is important. Doctors (and other medical professionals) are often vague about this, saying "Get in touch if things get any worse (or if things don't get better)". This leaves people with the dilemma of knowing that things have deteriorated (but maybe not enough to bother the doctor), or not improved (but maybe they should give it another day or two). Numbers are helpful, e.g. body weight, calories per day, pain score.
3. It is important for the goals to be realistic and Achievable. Nobody benefits if I go home from hospital intending to gain 1 kg every week and increase my feeding rate by 20 ml/hr every day. We know that my body can't tolerate that sort of feeding rate. Setting unrealistic goals is one of the surest ways for me to get disheartened, and probably end up back in hospital, sicker than I was before.
4. The goals and things to monitor must be Relevant to the situation. Monitoring my blood pressure or body temperature, for example, are useful things to do, but aren't directly relevant in determining whether I'm meeting my nutritional goals. Try to narrow down the list of things that can be measured to ensure that you focus only on the most important. Anything else just clouds the issue.
5. Set a Time limit on your goals, and be sensible about it. When I leave hospital after this admission, I hope to have gained weight and to have increased my body stores of various nutrients. This might be enough to keep me alive for several months, even if I fail miserably at tube feeding, but it would be far better for me to meet with my gastroenterologist or dietician after 3-4 weeks to discuss progress than for me to keep plugging away at my goals, independent of medical supervision, until I am a skinny wreck! Timely progress assessments will allow me to modify my goals and methods, and to put extra support in place if necessary, before I crash and burn.

In addition to the SMART categories, I will ask my team for their 'deal breakers'. These are the things that cause all other plans to grind to a halt. In my case, getting a high temperature has its own set of rules. If I start to run a fever, the SMART plan goes on the back burner and I have to seek urgent medical help. A more relevant deal breaker might be if I drop below a certain body weight, or fail to meet my daily calorie target for a specified number of days. These things are important enough toindicate that the current plan is not working, and that we need to regroup more urgently and come up with a new plan.

It is helpful to have these 'deal breakers' written down and specified, with a plan of action in each case. This is often presumed to be in the realm of common sense, but I can promise you now that my common sense goes out of the nearest window when I'm trying to avoid a hospital admission. Having a written (and agreed) protocol in place means that I have no 'wiggle room' to pretend that I didn't understand, or didn't think it was that serious.

I've been quite specific in my examples, referring to my own struggles with my digestive system, but this could just as easily apply to someone with rheumatoid arthritis, lupus, asthma or diabetes. Or pretty much anything else. Substitute your own symptoms and goals, and there you have it!

Monday, 25 March 2013

I have lots of medical supplies in my bedroom. Most of the supplies are stored in our garden shed, and the majority of the medications that are important enough to be in the house are stored downstairs. Upstairs medical supplies are mostly things that might be needed in an emergency.

Most of the supplies upstairs are stored in the drawers under my bed, neatly organised for easy access. In these drawers, I keep various dressings and splints, monitoring supplies and medications that I might need if I'm stuck in bed.

Next to my bed I have a set of drawers on wheels. This contains things that I use daily, organised so that I can find what I need (I'll take some pictures for another blog post). Each drawer only contains a couple of different things, out of necessity, as I often find myself rifling through these drawers when I'm half asleep, or trying not to wake my husband.

On top of the set of the drawers is a tray. This tray holds a pair of gloves, alcohol gel and alcohol wipes; syringes filled with pain medication and antihistamines, anti-inflammatory gel, scar gel, and my epi-pen. Overnight, this is where I keep my oxygen sats monitor, thermometer and blood glucose monitor (and glucose tablets). There is a torch at the front of the tray so that I can find things in the middle of the night.

Last night I needed my inhaler.

I looked on the tray, and didn't find it. I looked through each of the three drawers beside my bed, then in the drawers underneath my bed. I looked in the coolbag at the end of the bed (medications I take with me if I'm going out).

There were no inhalers in any of these places.

Eventually I gave up and asked my husband to get a new inhaler from one of the downstairs storage boxes.

It wasn't an emergency, and I certainly wasn't anxious that I couldn't find an inhaler (I found my nebuliser straight away, but decided that I would rather use an inhaler).

The significance of this only hit me this morning. I have had very severe asthma for most of my life. I can barely remember a time when I haven't carried an inhaler with me. I have inhalers and nebulised medications in every handbag, along with an epi-pen, steroids and antihistamines. I even keep a hospital bag packed at all times, ready to be grabbed on the way to the hospital (often by a paramedic), which contains lots of asthma medications, as well as a washbag and change of clothes.

But I haven't needed to use the hospital bag for eight months. EIGHT whole months without an emergency hospital admission. I haven't had an admission for asthma since 2011. Those of you who have known me for a while will gasp at this, I'm sure - I spent five months of 2011 in hospital with asthma, and averaged 6-12 asthma-related hospital admissions a year for many years. A year without severe asthma seemed completely unthinkable.

The fact that I didn't have an inhaler close to the bed amazes me. It isn't just that I have been surviving at home with severe asthma - things have been unimaginably well-controlled for longer than I ever could have expected. Of course, I'm still on high doses of maintenance medications, but my lungs are doing what they were made to do!

One of the first things I did this morning was to restock all the places that should have held inhalers (I don't want to jinx myself!), but every unopened inhaler box felt like a celebration!

Saturday, 2 March 2013

If you've read the last couple of blog entries, you'll know that I had surgery at the end of January. It was a planned operation to fuse one of the joints in my left thumb (the metacarpophalangeal joint).

One of the thing that I mentioned beforehand was that I was trying to prepare myself for the pain to be more than I anticipated. Despite the preparation, the pain was still more than I had anticipated, not helped by the fact that I don't respond to local anaesthetic, which was the preferred method of pain relief for my anaesthetist that day.

The surgical cast (an untidy mix of plaster of paris, crepe bandage and lots of tape) was removed after 2 1/2 weeks so the surgeons could check the wound and check x-rays. I asked the plaster technician how long I had out of the cast. The answer? About a minute and a half. He advised that I get my 'kit' ready while he was cutting the cast, and he'd cover for me while I washed my arm!

My kit? The same kit that I use for all plaster changes, regardless of which limb is currently plastered!

I use the cleansing wipes to clean my arm, removing all traces of iodine, chlorhexidine, sticky residue from the dressings, and dried blood. After couple of weeks under wraps, there's plenty of dry skin too, and the chance to rub at some of the itchy parts is blissful! Alcohol wipes are good at removing sticky residue, but are harsh on the skin. There is a time and a place for harsh chemicals and violent scrubbing. In between plaster casts is neither.

Once the arm is clean, use the dry flannel to exfoliate and gently buff away some of that dry skin. I promise this isn't just a cosmetic exercise. The dry skin contributes to the itching, which can be intense. It's hard to explain how all-consuming this itching can be - it wakes me from sleep, and focuses my mind, diverting attention from more important things. I can't concentrate on anything except the need to scratch under the cast!

Incidentally, I don't recommend sticking anything down the cast, but if you really must, make sure you it's CLEAN; don't use anything sharp, anything that will leave telltale marks on your skin (using the point of a pen is not a clever idea), or anything that will remain behind in the cast. Apparently, the plaster technicians regularly retrieve pen lids from casts. Adults, my dears, not children - you'd think they'd know better! Anyway, I would recommend gently using a ruler with a flannel wrapped around it. You can dampen the side of the flannel that's going to be against your skin, or cover it with moisturising cream. If you have a surgical wound, do NOT scratch, however gentle you think you're being. Just don't do it. Likewise, if you have fragile skin, an injury that is very unstable, or any increased infection risk, please resist the urge to scratch. The short-lived relief that you might get is not worth the many potential risks - infection, wound breakdown, skin damage/ulceration, and possible injury to the joint.

So, back to our nice clean arm: give the skin a nice, gentle but thorough scrub with the flannel, spray with toner (the Liz Earle toner that I use is very light, and made mostly with natural ingredients) to moisten the skin, and scrub again with the flannel.

I don't need to tell you to be careful around any wounds, surgical or otherwise. Now is not the time to break open any wounds, or introduce infection. If nothing else, it'll itch even more as new scabs form!

Now moisturise well. Epaderm is my first choice. I first encountered it when I was at medschool, doing a dermatology placement. It was prescribed for patients with severe eczema, to use instead of soap, and as a moisturiser. In the UK it's available over the counter from pharmacies. This is not a light, readily-absorbed cream. It is thick and slimy; unscented and uncoloured. I know, I'm not really selling it. However, what Epaderm lacks in cosmetic appeal, it makes up for in moisturising power. This is the moisturiser for neglected feet and hands, left overnight under socks or gloves. Or, as in this case, under tubular bandages, padding and layers of fibreglass for a month!

Of course, my arm will still look puny, with wasted muscles and glow-in-the-dark skin, but I've done everything I can to avoid the weeks of itching inside the plaster, and the weeks of flaking skin afterwards!

You'll notice that my kit is made up of things that are natural, uncoloured, and unfragranced. I have numerous allergies, and am very sensitive to chemicals in general. Regardless of that, whatever you put on your skin at this point will be held there, in close contact with the skin, for not just hours or days, but weeks, so choose carefully! Now is not the time to try out a new moisturising cream, or to try to mask that 'plaster cast' smell. Keeping your skin healthy is the best way to combat that!

Only TWELVE more days until my arm is free!

Oh, and the surgeons were very pleased with their handiwork: the scar and the joint fusion underneath. Good news!

Thursday, 24 January 2013

Having written about all the cosmetic things I do to keep myself
looking and feeling nice while I'm recovering from surgery, I felt that
there were also a number of things I would do to help my mental and
physical health during the recovery period.

One of the
things that people never tell you about surgery is how hard that
recovery period can be. In an age where cosmetic surgery is touted as a
'quick fix' and an 'easy option', it's natural to lose sight of what
actually happens during a surgical operation.

In my
opinion, surgery is not an easy answer to anything. But, having
said that, sometimes surgery is the only answer. Not,
in my case, to get bigger breasts, slimmer thighs, or a smaller nose. I
have
surgery to stabilise my joints on the rare occasion that there seems to
be a surgical
solution to a particularly problematic (unstable) joint. I have had
surgery in the past to remove my appendix, my tonsils and my adenoids,
and more recently, to fit a feeding tube into my small intestine, after
months of trying everything to avoid the need for surgery.

So,
we've established that I'd rather not have surgery, and that I would
prefer a conservative approach, exploring all other options before
resorting to surgery. But now I need to have an operation, and I want to
make sure that my recovery is as smooth and straightforward as
possible. For me, the key to this is preparation, which falls into three
categories: before the surgery, immediately after the surgery (hours
and days), and in the recovery period (weeks to months). Of course, the answer always lies in a list!

Be mentally prepared:

Know
that after the surgery, you will probably have a wound. This is a cut
that goes through all the layers of your skin and the tissues underneath
it. If you were lucky enough to have 'keyhole' surgery, you will have
several shorter wounds, but they are still wounds, they will still hurt,
and they still need to heal. If they are on your abdomen, you are
likely to feel them with every movement for several days, if not
longer.

So you have at least one wound. But the wound is
just the access point that allowed the surgeon(s) to get to the part of
your body that interested them. If you've had orthopaedic surgery, it is
likely that the muscles, ligaments and cartilage around the joint will
have been stretched, if not cut, torn or moved and reattached. You may
have broken bones (either the cause of the surgery, or resulting from it
if you need a joint re-aligned, for example) and pins, screws, plates,
and other things that belong in the garden shed, rather than inside
one's body. Sutures, staples and dressings all bring their own brand of
discomfort, as do plaster casts. Those applied during surgery are
unbelievably heavy and unwieldy. You may find that the dressings or
stitches cause irritation and itching, and problems all of their own,
without even thinking about the wound.

If your
surgery involved your GI tract, you may find that you have a lot of
pain, bloating and distension. The intestine does not like being
handled, and will make its displeasure known. Even if your GI tract was
left well alone, you may find that the medications given during surgery
have a GI effect. Painkillers can cause constipation; antibiotics can
cause diarrhoea. If you were ventilated during your operation, you may
have a sore throat from the tube, and/or a dry mouth, throat, nose and
face from the oxygen and anaesthetic gases. Ah yes, those anaesthetic
gases. And the other medications used to induce and maintain
anaesthesia. They cause nausea for many people, as do some of the strong
painkillers that are often used. Just for a moment stop and imagine how
much you would NOT want to vomit immediately after abdominal surgery.
Or surgery to your head/neck. Or to your ribcage/lungs/heart.

Cosmetic
surgery and weight loss surgery get so much coverage, and are now such
common procedures that it's easy to forget that they are still surgical
procedures. I once had orthopaedic surgery (actually, more than once,
but we'll just consider this one example). I was in hospital overnight
after the procedure, which lasted approximately half an hour. By any
standards, this was a routine, straightforward operation. I left
hospital with three scars, each only a couple of millimetres in length,
two wires in my wrist, and a plaster cast from finger tips to shoulder. I
can't tell you how much pain I had after that surgery. My surgeons had
focused on how simple the procedure was (from their point of view), so I
was really not prepared in my own mind to have lots of pain as well as
the usual annoyances of having a limb in a cast.

Before the surgery:

Prepare
yourself mentally for it to hurt a lot. Make sure that your doctor or
surgeon prescribes appropriate painkillers for after the surgery and ask
if there is anything they can use during the surgery (e.g. a nerve
block or local anaesthetic injection) to reduce the pain afterwards, or
if they would recommend using TENS, guided imagery, heat or cold
therapies. You may find that you only need simple over-the-counter
medications and ice packs for a couple of days, but it's always easier
for things to be prescribed in advance. If you find that simple
painkillers are not enough, chances are that it will be the middle of
the night and it's hard to get the on-call doctors to come and assess
you (because there's been an emergency, say) and then to write up the
medication, which may need to be ordered from pharmacy, while you feel
miserable for hours. If it's already prescribed and ordered and you
don't need to use it, that's great, but make sure it's there if you need
it. I would recommend asking your doctor to prescribe something for
nausea as well, to be given if you need it.

Discuss any
other medications that you take with your doctors and ask if there's
anything that you need to stop prior to surgery (e.g. garlic
supplements, St John's wort, blood thinners) or anything that you might
need to increase (e.g. steroids). If it's likely or possible that you
might have problems with swallowing after the surgery, ensure that your
medications are written up in alternative forms, e.g. IV. If you take
regular medications, make sure that you have a good supply before going
into hospital, and if you're started on any medications while in
hospital, ensure that you're given enough to last you the full course
(or until you can get more from your GP).

If you have
had previous problems with anaesthetic, or if you have other complex or
severe medical conditions, make sure you get blood tests done prior to
the surgery (this is usually offered at pre-op assessment, along with
ECG testing and x-rays if necessary) and speak to the surgeons and
anaesthetists beforehand. If you know that you need things to be done a
certain way, don't be afraid to ask. If you're a hard stick for IV
access, the anaesthetists can knock you out with anaesthetic gas and
then get the IV while you're asleep, if that's more comfortable for you.
If you have problems with fasting, ask if you can be admitted the
previous day for IV glucose, and/or to have your surgery scheduled early
in the day. If you have problems with anxiety, ask for premedication
for it. There are so many things for the anaesthetists to consider
before your operation, so if you don't mention the things that are
important to you, they may not think about them. Don't be afraid to take
responsibility for your own care!

Think about what
you're going to eat and drink for the week or fortnight following the
surgery. If you normally cook for other people at home, think about that
too. Being prepared for the worst case scenario, assume that you will
not cook. If you can, stock the freezer with meals to reheat - making
double portions of casseroles, bolognese, etc. for a couple of weeks
prior to the operation, and arrange for a friend to bring a meal or pick
up something from a local restaurant the first night you're home. If
you're not in an area where you can order groceries online for delivery,
ask a friend or family member to shop for you for a couple of weeks.
Stock up on meal replacement drinks or 'easy' snacks if you think you
might struggle to eat 'proper' meals. If you're likely to have a course
of antibiotics, consider buying probiotics to use once you've finished
the course of antibiotics.

If you have pets or
children, arrange for someone else to take on the main responsibilities
for a while. You can always go with them for a walk, but it can be
helpful to know that you don't *have* to go if you don't feel up to it.

Consider
where you're going to sleep. Is it upstairs? Is that going to be a
problem? Is it near to the bathroom if you need to get up in the night?
Do you have plenty of pillows and cushions to support you in bed, if
that's where you're going to spend a lot of time? Think about how you're
going to be able to get to the bedroom, the bathroom, and any other
room where you expect to spend a lot of time. You may find that it's
safer to have a pair of crutches downstairs and another pair upstairs so
that you can shuffle up and down the stairs on your bottom without
trying to carry sticks at the same time!

If you're on
crutches, how are you going to get around the house, and how are you
going to carry things? I have a little backpack that I wear around the
house. Actually, it has my feeding pump in it, but it has enough space
for a bottle of juice (doesn't spill). Consider putting hot drinks in a
flask and cold drinks in a bottle for safe carrying around the house. If
you think that you might need any equipment (dlf.org.uk has some good
examples of equipment or adaptations that may be helpful in various
situations), order it with plenty of time. The Red Cross are often able
to loan wheelchairs and equipment if you can't get the equipment from
your local Social Services department or from the hospital.

I
always try to increase my protein intake prior to surgery, and take a
vitamin and mineral supplement. If you smoke, surgery is a great reason
to stop (or cut down, or take a break). Almost nothing else impairs
healing quite like cigarette smoking. If you're diabetic, try to control
your blood sugars extra carefully in the run-up to surgery. If you're
overweight, try to lose some weight; if you're underweight, try to gain
some!

Recovering from surgery can be tedious, especially
if you can't go straight back to work, or back to your usual activities.
Set up 'dates' with friends, either for visits in person, or for
telephone calls or Skype calls. Now is a great time to stock up on DVD
box sets (beg, borrow or buy) and to sign up to a service that allows
you to watch films and TV programmes online.

Immediately after the surgery:

Don't
leave the hospital without written instructions on what medications you
need to take, the dose and the frequency. If it is a short course of
medication, make sure you know when to stop taking it. Get written
instructions about who to contact if there is a problem (including
out-of-hours) and what consistitutes a problem. Ask your doctors, nurses
and therapists to be as specific as possible. 'Get in touch if things
get worse' is a really common instruction, but can leave you with a
dilemma if things do get worse. How worse does worse need to be in order
to contact a doctor by telephone at midnight? You may have several
instructions - if you have a fever, or very fast heart rate, you may
need to go back to the hospital, but you may be able to deal with other
problems during normal clinic hours or with a visit to your own GP. If
possible, let the professionals make these decisions for you!

Take
your medication as prescribed. Painkillers work much better to prevent
pain than to stop it once it's got a hold on you (apologies, this is a
particular soap-box issue for me!). If you're worried about waking up
every six hours to take painkillers, you can ask for a long-acting
preparation that only needs to be taken every 12 hours. Set a timer to
help you remember to take your medications. Adding new meds can always
be confusing, especially if you're exhausted from the surgery and spaced
out on medications!

Ask for help. Friends and family
often say (and mean), "let me know if there's anything I can do" and we
don't let them know because we don't like to impose. Make a list of the
things that you find difficult after the surgery and show it to friends
and family if they express a desire to help. People are often happy to
pick up a few extras while they're at the supermarket, and other parents
at the school will often not mind collecting your children along with
their own. The more people you can find to help, the less you need to
ask any one person to do. If you can't cope with the idea of asking your
friends to come in and help with housework, now is a good time to pay
for a cleaner. It's cheaper than a course of physiotherapy, or having to
have your wound restitched because you put too much strain on it too
early.

Make sure that the house is warm enough/cool
enough. Even if you just heat/cool one room, it's important to be
comfortable. Trust me, shivering with a fresh four-inch abdominal wound
is uncomfortable.

Rest, recuperate and DO NOT FEEL
GUILTY. Now is not the time. If you need to stay in bed all day, do it.
If you can only concentrate on trashy fashion magazines, go for it.
Don't push yourself to get straight back to all your usual activities
and responsibilities. Sometimes we all need time and space to recover,
and no-one will begrudge you a few days in your pyjamas, snuggled up
with the cat, especially if you've just had surgery. Don't plan too many
activities - this is not a free holiday from work (at least not in the
first few days!) but give yourself time to rest.

In the longer term after surgery:

Do
the things that will help you to maintain your health. There is no
point in having surgery in the first place if you then do all the things
that your surgeon asks you not to do. You've put yourself through the
pain and difficulty of surgery, so you are certainly strong enough to
stick to a medication or exercise schedule, prescribed diet, or rehab
plan. I understand the temptation to 'just' play the piano a little bit
(immediately after wrist surgery) or to 'just' take off the splint for a
little while.

Follow up with your surgeons and any
other specialists that are involved in your care. If your wound is not
healing properly, for example, it's better to get specialist input
earlier rather than later. If your surgeon has suggested that you
shouldn't need to take painkillers after five days, and you are still
clock-watching for the next dose after a week, a quick call to your
surgeon's office could save you a lot of pain.

I've
written previously about pacing yourself and setting goals, and those
skills are likely to be relevant during your recovery period. Don't beat
yourself up if things don't go completely to plan. No-one will blame
you if you get an infection, have problems with wound healing, or the
surgery is just not a success. Keep dialogue open with your doctors,
nurses and therapists, and don't be afraid to ask if you think that you
would benefit from counselling, physiotherapy or any other specialist
input.

If you feel that you would benefit from complementary therapy, or input from another therapist or medical specialist, don't be afraid to ask. Many doctors and surgeons are open to input from complementary therapists, but do check with them first - they may be able to offer some services at the same hospital or clinic, or they may recommend some therapies as being more suitable than others.

Remember that your individual surgery may not
be a big deal in a surgeon's life. What has a place in his life for a
couple of hours on one day, along with several other operations on other
people, can be life changing for you. Some surgeons are very good at
understanding how much their patients can be impacted by surgery; others
not so much. Don't take it personally, but seek support from other
sources if your surgeon is not a 'people person'. If he or she is good
at the job, and does a beautiful job of the operation, that's enough.
There are plenty of other people, professional and otherwise, who can
support you emotionally and with the physical consequences of the
surgery.

Wednesday, 23 January 2013

Before we go any further, you should know that this blog post does not contain any medical advice. There are no exercises, no medications (or alternative remedies), no recommendations for tests or monitoring, and no diet guidelines.

So, if this isn't a medical guide, what is it?

This is a list of things that I do in the days or weeks before planned surgery to make my life easier in the days and weeks after the surgery. Of course, the nature of the surgery will change some things, but I'll try to be as general as possible.

Here in the UK, most people will know their surgery date at least a month in advance (for routine, non-urgent procedures). I like to use that time to think about the effects the surgery may have on my life while I'm recovering, and try to come up with as many solutions as possible before the problems have a chance to rear their ugly heads!

In my opinion, there is almost nothing worse than feeling weak and feeble, in pain, limited by wounds/dressings/plaster casts. Add to that the feeling of unwashed hair and skin, unwanted body hair, and flaking nails, and it's almost a recipe for disaster! Here are a few of the things that I do to prepare my body for surgery and to keep myself looking as normal as possible afterwards.

Hair:

Book a haircut as close to the date of your surgery as humanly possible - this will ensure that your hair looks as good as possible, even if you're not able to give it much attention. If you have very long, thick or curly hair, consider a change of style to one that needs minimal maintenance. This doesn't always mean short! My hair is wavy/curly and prone to frizz. Short styles, for me, mean endless conditioning and styling products and hours of blowdrying or using straightening irons or tongs. With a blunt cut just above shoulder length, I can get away with scrunching a little mousse through my hair and leaving it to dry naturally.

If your hair is coloured, make sure you get your roots done, preferably just before surgery, so that it will look fresh for as long as possible while you recover and build up enough energy to get to the salon for the next colour!

Styling your hair may be another hurdle, especially if the surgery affects your hands/arms/shoulders, or is likely to leave you feeling very weak. I recommend investing in the following basic kit:
1. Dry shampoo: Having hair that looks bouncy and freshly-washed without getting out of bed is like a miracle! If possible, try a couple of brands and stock up on cans of your favourite in various sizes. You may still need help to apply it, massage it in and brush it out again, but it still takes considerably less effort for both you and your helper than a full shampoo and conditioner, plus it doesn't leave your hair wet, so no risk of getting chilled (or getting wet bedclothes)
2. Alice bands and 'crocodile' clips: These are enough to hold your hair back from your face, even if you have one hand out of action. Some people find the fabric bands easier than solid ones, but I'm a fan of the solid ones. The wider the better, in order to cover as much hair as possible! Having the crocodile clips as well means that you can try out a variety of styles with minimal effort or assistance
3. A wide-toothed comb is great for gentle hair-styling (or just detangling); if you can get one with a long handle, so much the better!

If your surgery means that blowdrying your hair is not an option, there are two things you can do. The first is to resign yourself to having a different style for a few weeks, working with your natural hair texture. As you'll be giving your hair a break from heated styling tools, it's a good opportunity to use intensive deep conditioners. Put a soft towel over your pillow and apply the conditioner. Massage your scalp well, and then comb the conditioner through to the ends of your hair. It can stay there until you next wash your hair. Not particularly glamourous or attractive, but your hair will be in better condition afterwards! The other option is to book a course of regular blow-dry treatments at your hairdressing salon. It's a lovely thing to do to pamper yourself, and may be the only way to get your hair washed and styled properly if you have an arm in a cast, but consider how you're going to get to and from the salon if you're not up to walking and not allowed to drive.

Skin:

After surgery, you may not feel like keeping up with your usual skincare regime. I like to cleanse, tone and moisturise, and have various favourite products to exfoliate and moisturise my skin. This all goes out of the window after any surgery, but especially if I have an arm in plaster. Simple cleansing wipes are my saving grace - they remove everything (even betadine, chlorhexidine and EEG glue - all of which you may encounter during your hospital stay!), and leave my skin feeling lovely. At a pinch, you could use them to wash your body, but I wouldn't recommend doing this more than once! My top five tips for skin have to be:
1. If you wax, book a wax prior to your surgery: If you don't wax, think about whether you're going to keep up with whatever method you normally use, and whether it would bother you if you didn't keep up with it. Waxing lasts for 4-6 weeks for most people, and there's nothing quite like feeling smooth and polished when you're a bit weak.
2. Simple cleansing wipes
3. A pleasantly fragranced deodorant (I find spray easier than any other method of application)
4. A real sponge and a mild liquid soap: it's hard to rinse properly if you're washing in bed or in a chair, but it's not the end of the world if a mild soap stays on your skin - aqueous cream can be used instead of liquid soap - it doesn't feel particularly 'cleansing' but it does work, and it'll leave your skin lovely and soft
5. A luxurious moisturiser: it may be more difficult to apply, but having the luxury of my favourite scent as well as soft skin is worth the time it takes to apply it! There are lots of different types of moisturiser, depending on your needs - it may be easier to use a body butter that's almost solid and won't run everywhere, a pump dispenser, or a spray.

Cosmetic:

More than any other part of me, my face gives me away after surgery. It takes almost nothing to make me look pale and drawn, with dark circles around my eyes, and it is guaranteed to make me feel worse if I see myself in the mirror looking like that. Of course, there's always the option to just avoid the mirror, but let's assume that we generally like mirrors.

Before surgery:
1. Shape your eyebrows and wax/thread/pluck any stray hairs
2. Get your eyelashes tinted: this is cheap and readily available at salons, and will mean that you don't need to wear mascara for up to six weeks. I have no arguments for the pedants who say that you don't need to wear mascara anyway. I like to have dark lashes, and drawing attention to my lashes and big green/blue eyes is better than drawing attention to the dark circles around my eyes!
3. Invest in a cream blush, or even better, a cream product for cheeks and lips: I love the Benefit Benetint lip and cheek balm and Bobbi Brown's Pot Rouge in Powder Pink. Give me 30 seconds with either of these, and I'll magically transform into a healthy-looking creature before your very eyes.
4. Get a really good brightening concealer for under-eye bags and any other dark shadows that may emerge post-surgery: My intention is not really to promote lots of beauty products, but I use Clinique's Airbrush Concealer. I've used it for many years, and love it. It is also very easy to apply. Even with one hand. Even if that hand is your non-dominant hand.
5. Stock up on moisturiser and lip balm: Hospitals are dry places, and my skin is dry and flaky for days or even weeks afterwards, so I use a much heavier moisturiser than usual.
6. Choose some low-profile jewellery to wear while you're recovering: You'll probably have to remove all your jewellery for the surgery (you may be allowed to tape over a wedding band) but you'll need something simple to wear afterwards, if only to maintain piercings (don't forget about belly buttons, tongues, lips, etc. and make sure you have someone ready to put them back in for you after surgery if you can't do it yourself). I usually wear plain pearl or diamond stud earrings, a simple, light necklace, and my wedding and engagement rings, but no other jewellery. It's enough to keep me looking polished, and to keep the holes in my earlobes open, and that's all I need.

After surgery:
Get a manicure and pedicure: Don't make the mistake of doing this prior to surgery, as you'll just have to take it off, which is a bit of a nightmare if you have a gel or shellac manicure. Once you're safely out of the hospital, book yourself in for a mani-pedi, preferably with gel or shellac polish, which lasts for a couple of weeks without chipping or flaking. I like to get a bright colour on my feet and a neutral colour on my hands - it does have to go with everything for two weeks, after all! If you're not well enough to go out for your manicure, you may be able to find a mobile technician who will come to your home, or even to the hospital.

After all this preparation, I'm sure you're just about ready to just get to the hospital so that you can have a break, but three last things:
1. Order some pretty seasonal flowers to be delivered a couple of days after you get home from hospital (unless you're likely to be inundated with floral gifts from friends), or buy yourself an orchid in bud, so that it'll flower when you get home and are there to see it.
2. Put fresh sheets on your bed ready for when you get back. If you're anything like me, this thought will sustain you through the hard first night in the hospital after surgery. I tell myself that I just have to get through this night (and maybe a couple of others) and then I can go home and snuggle into my lovely soft bed with the clean, fresh sheets, and that means that Everything Will Be Alright.

About Me

Despite my best efforts, I still spend about 1/3 of my time in hospital (not including outpatient appointments). I have a genetic disorder that affects my joints, my digestive system, my autonomic nervous system (control of blood pressure, heart rate, temperature, and other 'automatic' functions) and hearing. I also have severe asthma. The combination of these things means that I'm almost always exhausted and in pain - this is how I live my life. There is no cure that will restore my quality of life to 'normal', so I have to find quality in what I have. I like things to be organised (makes life easier), love to be surrounded by beautiful things, enjoy knitting, reading and baking. As with all things, however, nothing is perfect, and we all make compromises as we try to make the best of what we have.